Does Plaquenil Hydroxychloroquine) help with Sjorgens

[Miamigirl305]

I was recently diagnosed with Sjogrens, my rheumatologist prescribed Plaquenil (Hydroxychloroquine) I read some studies that seem to suggest that there is no evidence Plaquenil helps with Sjogrens like it does with Lupus. I'm now doubting whether or not to take it. Has Plaquenil helped your Sjogrens?

[HollyHeski]

It takes a while but yes it was worth talking for me.

[Accam1953]

Would recommend at least giving it a try. Been on Plaquenil for about 5 years. took several months for SS symptoms to reduce. Allergic reactions are possible. Regular eye examinations also as advised as a small percentage of patients can suffer retinal,damage.

[Megansheart]

Yes! I started Plaquenil (Hydroxychloraquine) two+ years ago and I do think it has helped my energy levels. It’s sometimes hard to quantify how much a particular drug helps but this one I believe has helped me.

On the other hand, I started Methotrexate about one year ago because of increasing joint involvement but I did not think that it helped significantly, so after about eight months I stopped taking it.

My position is; why burden our Livers with medications which are not effective?

Thinking out loud here! Perhaps there is a continuum of Sjögrens which is more on the Lupus end and for these people, Hydroxychloraquine may help more than the others. Who knows, as generally there is a paucity of good, hard research for Sjögren’s treatments, so evidence is a bit thin on the ground,

[weathervane]

I was put on hydroxychlorine when i was diagnosed, it took about 12 weeks to make any difference , however the difference was marginal . I have now been on rituximab infusions for over 3 years and it has really helped. There are side effects with every treatment but doing nothing would have meant I wouldn’t have been able to function. Best wishes, i hope you make the right decision for you 🌸🌸🌸

[Catpuss66]

Helped me, been on since March with fatigue I may have an overlap with myosotis now some lung involvement , may have slowed things down a bit. I did have a bit of skin reaction bit took some strong antihistamines all settled. I was quite motivated to take as other options were predisalone which did not want to take. Hope that helps

[Tally]

I am really keen to hear from people with your question. I was placed on Plaquenil 10 years ago but right on target allergies and reactions commenced within 24 hours. ..in saying this the fatigue now is debilitating and I wonder if I should retry.

I wish you nothing but good luck with your health care

[Devon40]

Plaquenil is one of the medications used for Sjogren's and RA that has the least side effects. It's important to have a base eye test at the beginning and then 6 month check ups, but I hear people have taken it for years with no side effects.

I took it for 9 months and then discontinued, as I couldn't see it really helped. But I'd think it's definitely worth a try.

Lupus is apparently very close to Sjogren's in many ways. Lupus has had more research and plaquenil is frequently recommended for Lupus.

Good luck. It's a really difficult disease to live with!

Check out "Smart Patients" - has lots of support and information.

[Littlemisssunshine87]

I couldn’t take it due to the side effects although I was prescribed a brand that is more common for bad side effects. I was willing to try another brand but I was told that if I react to one then I’ll react to any brand 🤷🏼‍♀️ it caused my eyes to feel even worse and a whole host of problems as each day went on with it. I’m very med sensitive though.

It’s a big help to some though and would recommend trying if that’s what your rhuemy suggested.

[Roswitha]

I think it’s a great medication but it does leave your eyes more sensitive to light. I have been on it for a couple of years now, and it took about 3 months to really make any difference. When I think back I remember how I could not get through the day due to extreme fatigue, as well as terrible joint pains. I still get pain but not to the same extent and I have learnt to pace myself more otherwise I really suffer later in the evening and cannot get to sleep at night due to joint pain. I had both knees operated on due to badly torn meniscus, and the surgeon remarked that my joints were very red with inflammation whereas the inside of the knees should be white not red. He told me not to push myself to exercise on inflamed knees, but recommended non weight bearing exercise like swimming and water aerobics especially after surgery. I still remember every day I had to sleep during the day due to fatigue, now I get through the day but pace myself due to joint pain. I hope this helps.

[25clai]

It’s been brilliant for me. I’ve been on it for 3 years now. Took a while to kick in, but really helped my fatigue/dryness/joint pain. Prior to plaquenil I got to a stage where every step I took was painful in my hips and knee joints. I would wake up with agonising pain in my hands ,radiating up my arms. Additionally I had suffered years of bladder problems, which in spite of numerous operations and specialist tests/ trials etc, did not improve, but just got worse and worse, until plaquenil.

I still juggle a lot of issues, but overall it has allowed me to get some of my life back. I would try it, not everyone gets the same results from it, but worth a go.

[Aquamarine88]

I've just had the salivary biopsy as i was told if youre too far gone the plaquenil wont help, and no major glands showwed up on a nuclear scan. So i am really interested in this question

[Stumpy01]

I did use Plaquenil but did me no favours. I now use Arava 20 mg and 10mg on alternate days. This has bought my white blood cell count back down and reduced the inflamation. As i have Fibromyalgia as well, I take Citalopram 40mg in the morning. It is an antidepressant and has a secondary pain relief benefit. Also on Gabapenton 100mg at night for pain.

Hope this helps.

[Candide1]

plaquenil works for about half of us. It did not help me.